There has been much hulabaloo made about a recent unpublished study that said that people on a strict gluten free diet are consistently exposed to gluten. My answer is…. of course.

Celiac.com reported on a study that is coming out shortly in the journal Gastroenterology (link here). The study involved 18 celiac patients on a strict gluten free diet. The study authors took samples of the patients food for 7 days. The study authors also reviewed stool and urine samples from these asymptomatic patients. Fourty percent of the food contained more than 20ppm and six percent of the food had over 200ppm. Urine and stool samples reported gluten as well.

I’m sure the people in this study were extra careful in what they were eating knowing full well their food, urine, and stool would be tested for gluten content.

My answer to this is – of course we are exposed to gluten. It is everywhere and in everything. Nobody is 100% gluten free. Being 100% gluten free is impossible unless you live on a farm that doesn’t produce wheat, rye, or barley and only eat fruits, vegetables, and proteins produced from that farm. Also, to be 100% gluten free, one could never eat outside their home or eat any processed foods. It would be the equivalent of living in a food bubble – kind of like the boy in the bubble.

The trick to living with this disease is to minimize the risk to the best of your ability. Eat whole foods as much as possible. Eat very few gluten free processed foods. Then you also have to balance living your life! At what point does that pre-packaged gluten free burrito help someone stay gluten free when they are starving and on the run.

We are really caught in a Catch-22 here. We can’t eat food because it makes us sick. Yet, we have to eat to live. Alcoholics can just stop drinking alcohol to make their issue go away.* We can’t do that. We have to eat to live. Without eating, we will die. For me, it would take a long time for that to happen.** Nonetheless, it is still a serious issue.

And here’s the other thing, the research these scientists did is not new. There are a plethora of studies indicating that those following a gluten free diet are getting significant amounts of gluten. From a 2018 article, “The average inadvertent exposure to gluten by CD individuals on a GFD was estimated to be ∼150–400 (mean) and ∼100–150 (median) mg/d using the stool test and ∼300–400 (mean) and ∼150 (median) mg/d using the urine test.” From a 2016 article, “Individuals who believe they are following a GFD are not readily able to correctly identify foods that are GF, which suggests ongoing gluten consumption may be occurring, even among patients who believe they are “strictly” adherent.” An article from 2015, “Many patients
consider that the lack of therapeutic alternatives to diet worsens
their quality of life.”

A quick search reveals a ton of articles regarding the difficulty of a gluten free diet, lack of compliance to the gluten free diet, social implications of the gluten free diet, blah, blah, blah….I’m just not sure why on earth scientists haven’t figured it out yet and wasting money on another study that tells me something I already knew is a waste of money in my book. The conclusions of the study is not new information.

I’m mad because we know the gluten free diet is really, really hard to get right. Some might even say impossible. So, my answer is, stop funding studies looking at how impossible the diet is and look for a freaking cure! Don’t look at how celiac patients aren’t compliant, figure out a way to help us be more compliant. Get the FDA to stop their lax enforcement of gluten free labelling laws. Ensure that gluten is labelled in prescription medication. Stop telling me I’m doing the gluten free diet wrong and start helping me get it right you arrogant putzes!

Anyway, the bottom line here is we need help to accomplish a gluten free diet. We aren’t compliant with a gluten free diet, not because we don’t want to be, but because it is impossible. So, when your blood tests at the doctor’s office after years of a gluten free diet and they give you that look – you know the one – tell them to help you. Look them straight in the eye and tell them to get involved in research to give you a cure celiac disease.

I’m a little wound up now. I am also super angry now that I’ve thought about the ramifications of this study and what it really means. I think its time to use our voices and raise some heck! I’m not normally a rabble rouser, but today, I’m ready to light some things on fire (figuratively not literally)!

*Please note I’m not making light of alcoholism here, I’m just making a comparison. Alcoholism is a terrible and dangerous issue that can only be addressed by alcohol abstinence.

** Fat joke here. Just kidding!

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